New and confused!


#1
My husband was diagnosed with MSA a year ago at the age of 59. This was based on some minor symptoms, e.g. slight jerking of finger, some clumsiness and slightly stooped posture due to what we thought was a bad back. We were totally devastated at the diagnosis, particularly since we were offered no tests and this was based purely on our first meeting and discussion, so a clinical diagnosis. Since then we have struggled to understand how such a definitive diagnosis can be made when all of the symptoms my husband has are also Parkinson's symptoms. He is taking levadopa and this seems to have a general beneficial effect which is also confusing since we were led to believe MSA would not respond to dopamine. In the last year there has been minimal change to his symptoms, but the consultant has reiterated his diagnosis when we saw him a few weeks ago. Has anyone else had a definitive diagnosis of MSA at a first consultation? Apart from trying to come to terms with such a shocking diagnosis and prognosis we are anxious to actively pursue any potential care management strategies. I have just heard about movement specialists and told we should be seeing them rather than a neurologist. What exactly can they do and how can they help in such situations?
For the most part we are trying to live life despite the shadow of this terrible disease. Any tips or advice appreciated.

#2
Hello Strider, Welcome to the forum,

If you google MSA Trust on the web you will find lots of information and I think they have some nurses around the country and a helpline.They will be able to reassure you about your comcerns.
My husband has had PD for almost thiry years and I ran a branch for quite a number of years, we had several people with MSA and PSP as well as PD in our branch so I do understand your concerns and doubts, please get in touch with the MSA trust soon to help you understand and support you both.
best wishes
vivian

#3
Hi Strider...

... lovely to have you with us..welcome - although I'm sure, like me,
whatever the prognosis, you'd rather it was a cold or flu... at least you know thats going to go away!!... But.. here we are... and believe me, you've come to the right place...whatever the outcome of your deliberations you will always find a warm welcome/shoulder to cry on/someone to 'shout' at... they are all a lovely bunch..

So, too, are the HelpLine folk... I try to be positive as much as I can, but you know.. there are "days" - and it is then that the Forum and the HelpLine really "score"..

Just so you know who you're talking to - my name is David, I'm 66, retired College Bursar,live near the Channel Ports/Tunnel.. wonderful wife and two kids in their 30's... My 'manifestation' is in stiffness, slowness, bit of tight chest/abdomen and the inevitable "angst" at times... diagnosed Jan'y 2011 but go to gym, local choir and try to exercise as much as possible.. Meds are Mirapexin and Azilect... together with "off prescription" once a day Gin and Tonic!!

Please keep in touch.. and warm wishes... bursardavid.

#4
Welcome to the Forum. I know nothing about your predicament but I am greatly encouraged by Vivian's reply and the warmth of Bursar's Davids welcome.

#5
Thanks for your messages of welcome and support- its good to know there's someone out there. We have been on the MSA website, but honestly have found it all very grim and whilst we are in doubt about the diagnosis prefer what we feel is the more positive outlook from this forum. Also I note there is a real lack of MSA support groups in our area i.e West Midlands-the nearest group being 50 miles away.
It would be interesting to know how partners of sufferers feel..and what support is available for us. I was lucky enough to get some sessions with a psychotherapist who taught me some valuable coping strategies i.e. concentrating on the here and now and not looking too far ahead and other cognitive behavioural techniques- sadly this sort of therapy not available on the NHS!
Totally agree however with the non presciption therapeutic value of a G & T.

#6
Hello Strider,
I too am new to the forum and I suspect you debated for ages whether to post your question on this forum. I posted my first one last week and was amazed at how many people read it and was thankful to those who replied.
I was especially interested to read your post as my husband was diagnosed with Parkinson's at the age of 57, he is now nearly 61. He has been unable to take all medication apart from a low dose of Madopar, which he has been on for the past 8 weeks. What happens when the dose is increased we do not know. Madopar doesn't seem to be doing anything and he is continuing thinking a higher dose might "kick in".

Msa has been suggested to us by 2 consultants and a Parkinson Nurse mainly because of the medication being of no help, but our current consultant has said my husband has Parkinson's until we can prove otherwise. He may just be unable to take the drugs. So those are the words we are listening to.
Msa can only be confirmed after death, so your consultant I believe was very wrong to even mention it on your first meeting and as you say Levodapa is proving of some benefit and with MSA it doesn't.

My husband does not want to know anything about MSA, he does know it is not good, but he prefers not to know anything else. I on the other hand like to know all what is going on, so I can deal with it my way.

With regards to a G and T it works wonders for me, but on any medication it doesn't agree with my husband, he has said many times that he would love a pint!!!

By the way we also live in the West Midlands.
keep posting would love to hear how your husband is getting on and there are lots of listenng ears on this site, which can give great support and advice.

#7
Hi popsie.
Really good to hear from you. You are so right that I agonised for ages whether I should post anything on the forum but having spent a year trying to come to terms with the diagnosis felt it would be good to see what support is out there. We have received very little comfort or advice from the consultant who has twice given us a diagnosis of MSA based on a short consultation where he asked a few questions. Interesting that your consultants approach is that its parkinsons until proved otherwise. Ours is just the opposite.We are now seeking a second opinion having deliberated about the merits of this. My husband believes that the diagnosis is almost irrelevant I.e he's got what he's got. He is more interested in how we now live our life and research into treatments. He is incredibly strong and accepting. I go through so many emotions , anger, frustration, sadness,fear but like you feel I want to know everything I can about this disease in order to help him. We are seeing a so called expert in London in the next week,so will let you know how things go . It would be good to stay in touch and share our experiences particularly since we live in the same area.
Best wishes
Strider

#8
I found this article on the difficulty of diagnosing MSA very interesting particulary the datscan images.
http://onlinelibrary.wiley.com/doi/10.1002/mds.24000/full

would be very interested indeed to hear the results of your 2nd opinon.

best wishes
T

#9
Hello Strider and Popsie,


Just to let you know that my friend was diagnosed with PD which she was treated with for almost twenty years, she managed on quite low medication and was given the apo pump with a very low dose for several years, then when she died she donated her brain to the tissue bank and she had in fact had MSA all the time. Several people I have met with MSA have problems with their speech being very quiet so perhaps a speech therapist at an early stage would be beneficial. It is a shame you have no support group in your area as a couple I know here speak very highly of the support they have been given.
my very best wishes
vivian

#10
Hi Strider,

I am also looking at possibly having MSA. When I first saw my Neuro last Dec she told me that I had definite Parkinsonian symptoms but also symptoms that were not and referred me to have a MRI and Datscan. The Datscan was abnormal and showed a very reduced amount of Dopamine and when I saw her for the second time in March she said that she was 95% sure I had PD BUT because of the presence of postural hypotension and bladder symptoms there was a 5% chance of MSA and arranged for more tests to look into the autonomic nervous system. The first results of these tests have come through as abnormal or borderline and on the basis of these results I have to have further tests.

My Neuro advised me to look at the Sarah Mathinson Trust for a balanced and informed view on MSA, and having looked it makes grim reading. I am clinging onto the hope that I have PD on the basis that my Neuro told me that the treatment for both is the same only that PD responds well to it and MSA hardly responds to it. She prescribed Madopar 62.5mg twice daily to be increased over 3 weeks to 125mg three times daily with the proviso that if there was an improvement before getting to the top dosage that I stayed on 62.5mg three times daily. I found a marked improvement within 2 days and am sticking on the dosage until I see my Neuro again in June.

All this has not quite quelled the fear of MSA so I talked it over with my GP. He told me that he has a patient that was dx 20yrs ago with MSA who can still walk and that it is extremely difficult to dx MSA, so not to worry too much at this stage.

Hopefully the fact that both your husband and myself have responded positively to the medication means that we have PD rather than MSA.

I think that you are doing the right thing seeking a second opinion as my Neuro is reluctant to dx MSA without it being looked much deeper into.

My thoughts are with you and I hope for a positive outcome for both of us. (I never thought that I would be hoping to have PD!)

Best Wishes

Topsy

#11
Hi Topsy
Thanks for your words of comfort and encouragement. You have definitely given us another perspective on the MSA vs PD debate. My husband is still relatively ok - he doesnt have any postural hypotension.. main symptoms are stooped gait, feeling unbalanced and recently started with REM sleep disorder i.e. nightmares. We will see how the second opinion goes. Meanwhile we try to keep positive and look forward to hearing more from fellow sufferers like yourself.
Strider